Lessons learnt about infection in the cold, dark, winter days of January

I got hit by a dose of reality in January. Well, hang on, I’m getting a little ahead of myself there. First I got hit by a dose of a winter flu virus.

I woke up on a Saturday morning (it’s always the weekend that I get ill, and normally I’m “nicely” recovered by late Sunday evening, in order to go to work on Monday morning…) and, well, barely woke up. Bed was where I stayed for almost all of the weekend, with my greatest achievement being a heroic transfer to the sofa in the sitting room at some point on Sunday. And there I stayed. Not just for Sunday as it turned out, but for several more days. One reason for this is that whilst the rest of the house is subject to the temperature defined by the central heating, an individual gas fire in the sitting room allowed me to keep that room nice and snug, even at 3am, without warming up the rest of the house.

Lesson #1: If, at least in my condition, you find yourself rather temperature-sensitive, it might be a good idea to take your own bodily temperature. With hindsight, not taking my temperature seems idiotic, but I wasn’t quite thinking straight at the time…

So I drifted on to mid-week, not really getting off the sofa much, but somehow thinking “ah, but tomorrow I’ll surely feel better”. In fairness to me, there was a hint of logic to this thought, in that in mid-December I’d had a minor bout of some kind of winter virus, which I’d shaken off in just a couple of days.

And then come Wednesday that week, my steroid day, I popped the dexamethasone and, lo and behold, started to feel much better late morning and by the afternoon, was positively bouncing along. Again, with a clear head, it seems crazy that I didn’t really register the fact that it’s like that EVERY WEEK with the dexamethasone…

Lesson #2: Be aware of the very artificial – and always temporary – boost that the dexamethasone gives you.

And it is temporary, because by Thursday afternoon I started to realise that I was crashing back down rather fast, and on Friday morning, finally taking my temperature just to put a numerical value on it, it was staring me rather bleakly in the face – I was really quite unwell and needed some professional medical intervention. So, after a call to the acute oncology ward at the hospital, I packed a bag with a few items of nonsensical stuff and then slumped back down on the sofa and got my lovely wife to pack some more sensible items, and then was dropped off at the hospital.

A quick blood test later and the reality was unavoidable – yes, I knew I wasn’t very well, as I felt rubbish, but the blood values spelled it out to me – I was quite significantly neutropenic (i.e. with a low neutrophil count – neutrophils being (normally) the most common type of white blood cell and an essential part of the immune system). The medics who talked to me had then sense to tell me off for not coming in sooner and in particular for being so slow to take my temperature. And I was admitted to the hospital and immediately started on a powerful IV antibiotic.

Lesson #3: Don’t forget that the chemotherapy, as well as attacking the myeloma cells, also suppresses the immune system, and of course as well as the dexamethasone mid-week I’d also kept merrily taking the lenalidomide all week. Suffice to say that as soon as I was admitted (and thus no longer in charge of my drug regime) I wasn’t taking the lenalidomide for a few days…

I rapidly felt much better after a day or so on the IV antibiotic, and, having been admitted on a Friday, by Sunday afternoon was feeling much more normal, quite bored, and hoping that on Monday I might be discharged. Until on Monday morning the really very experienced “junior” doctor who did the ward round told me that the chest x-ray I’d had, the sputum tests I’d done, further blood tests, and the sound of my chest, told them that I’d got pneumonia…

I really didn’t see that coming. Yes I suppose I’d noticed that my breathing was a bit flatter than usual, but I’d not thought much of it. I wasn’t coughing much. But that kept me in for another couple of days, though the IV antibiotic had really done its stuff, and around then I was in fact switched from the IV to an oral antibiotic. But a couple more days stuck in the hospital were unavoidable, until on the Wednesday I was discharged. A slow couple of days at home – back to the sofa! – but feeling entirely different and by the weekend I was recovered, but just slow to move around. I went back to work the following Monday.

So all in all various lessons learned. On the one hand, as this whole blog shows and as I emphasised in my last post, I’m lucky that generally, despite the fact that I’ve been diagnosed with two conditions that even individually are serious, and often have a rapid negative effect on those who are diagnosed with even one of them, much of life has continued fairly normally for me in the nearly 4 years since my diagnosis. But on the other hand there are limits, as this recent episode of viral (and bacterial) infection showed me, and I can’t just pretend that I’m physiologically normal. Most of all need to watch out for infections when they turn significant, and get help promptly when they do…